The Problem of Hidden Illnesses a.k.a. “But you look fine…”

Suffering from a hidden illness can be frustrating and depressing. This can include mental illnesses like high-functioning depression/anxiety, PTSD and bulimia — just to name a few — to chronic pain, fibromyalgia, and a variety of other illnesses that deeply impact daily living while presenting a fairly ‘fine’ exterior. It’s almost easier to have a cast or bandaged body part that clearly reminds us, and those around us, that there is something wrong. If there is no external evidence, we can tend to forget that a person is struggling or potentially needing some form of help. Here are some of the challenges with having an illness or condition/disorder that is hidden.

  • Hidden illnesses can be quite isolating. If the condition you are dealing with reduces your energy, you might withdraw from social and other commitments. When you decline an invitation for the second or third time, you might determine it’s just easier to say no than to wait and see if you are up for it. The problem with this scenario going unchecked is that we need connection and support. Isolation isn’t the best option as it often leads us into negative thinking that doesn’t get challenged by the input of others.
  • Hidden illnesses can be misunderstood. Even when we do explain what we are facing, there can be misunderstanding. Everyone functions out of their own bias and worldview and unfortunately, this can skew our ability to consider another person’s situation without judgment. Just because we don’t understand something doesn’t mean we know what it’s like. “Why would anyone throw up their food?!” Because they have bulimia! That’s why. You don’t have to understand someone’s struggle in order to support them.
  • Hidden illnesses can prevent proper care and support. This is where a person might hear things like “You look okay.” This is harder for the person and those in their support system. If we are the person with the hidden condition, we may get tired of having to relay our need for help. We may even get told, ‘but you look okay’ or ‘but you have good mobility.’ These comments may invalidate or frustrate the person, causing them to stop asking. On the flip side, support persons might miss the valid needs a person has. Since things look okay, then they must be! Right?
  • So what can you do? If you are the person with the illness, use your voice. Educate those in your support network about the challenges you face. If you don’t tell them, they are not going to know.Don’t rely on non-verbals, use your voice. Most persons in our life do want to help, they just don’t know what to do that is actually helpful. Don’t exclude yourself from getting valid needs met by going into ‘I don’t want to be a burden’ mode. Of course you don’t want to be a burden, but your hidden illness already is a burden. Don’t try to carry it all alone! Remember that you still have things to offer those in your life — your companionship, wisdom, humour, love, etc. This is what community and relationship is about.
  • If you are the support person, ask the person questions like ‘how can I help?’ or ‘what do you need from me?’ You may want to give them an option of HOW you are going to help, not if.  Instead of asking, ‘is there anyway I can help’ ask how they would like that need met. “I’m going to walk your dog this week. Would you prefer I do that tomorrow or Saturday?” You might have to make a point of checking in with them regarding their present condition.How are they doing this afternoon?  Ask them what they are most struggling with at this time — it might be physical, mental, emotional or spiritual. Tell them you don’t understand — can’t imagine what it’s like for them. However, we can love them, care about them, spend time with them and help them out as they educate us as to what is helpful. They can enrich our lives just as we can enrich theirs.
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